I'm from NJ and have relapsed SLL - unmutated - as far as I know I don't have any the mutations that make the disease really high risk. My doctor wants to put me in Ibrutinib because my last PET Scan should the lymph nodes neck, axilla, abdomen and pelvis are getting bulky and some new nodes are appearing. The thing is, the metabolic activity is low and other than frequesnt infections I feel OK. I am starting IVIG in June. I don't want to start treatment with Ibrutinib. I've so much about the cost of Ibrutinib as well as the side effects. I checked in my area of NJ with Medicare,the out of pocket cost for Ibrutinib is over $700 a month.

Does anyone know of any grants available if you are on Medicare to help offset the cost? I checked 2 Foundations provided by my doctor, and 1 only provides grant if you have NO insurance and the other provides grants to Medicare recipients but only if the money doesn't run out. Thing is I don't want to start Ibrutinib if I can't afford it when I go on Medicare.

Look into You & I ( they are greatly helpful with my costs) , Johnson & Johnson- ask your doctors' financial office what they might know. I am trying to figure out all this Medicare RX stuff too before November.